One of the most significant bizarre components of this journey is that I feel ok. I am not that symptomatic. It hits me in spurts. And so when it does, I actually think it isn't related. My husband often points out to me in these moments that I am "crazy" if I am not connecting the dots. He's not the only one. Friends give me sideways looks when I try to go down this road with them too. Admittedly, I am quite cozy with the concept of denial.
My brother had me look up the 5 (or was it 7?) stages of denial. Orb, you can tell I studied hard. I am swinging between the stages like a chimp in the canopy of a forest -- big long swinging arms and when I hit the top of the next tree, it sways greatly to adjust to my presence. I've visited a new tree the last couple weeks. I am graduating from being annoyed with how I feel, to frustrated which leads me to the big A, anger. I've determined this because mopey slow ballads are waning and now I am craving hard crunching rawk bands. Think Rage Against the Machine, System of a Down or Ramones, cranked very loud. I am kinda over crying to John Legend's hit every time I hear one stinking line. Or quietly trying not to weep when I see beautiful pictures of my kids.
Perhaps in an effort to balance the surging anger, like a good mixologist, I am subconsciously starting to get excited. Excited because family and friends are making travel arrangements to visit. Like I've gone to some extreme lengths for visitors, eh? Come visit me on the Isle of Denial! We are conveniently located 10 mins from the Philadelphia International Airport. I think this is starting to be Acceptance? I have felt so much lighter. I have continued to feel better emotionally and mentally from the the last week, with smaller and smaller back slides or visits to other trees.
So that whole symptoms thing. Fleeting. It isn't constant. I feel very lucky. I have gotten a taste of what it would feel like to live with heart disease graduating slowly to congestive heart failure, effecting every day living -- only things I had previously read about. Not cool. Debilitating. All these items below subside within a few minutes if I sit still. So I've seriously been rationalizing this list of symptoms as related to anxiety or not eating well. Which is a very convenient box when I can't deal. Drumroll please ...
1) Tired/Fatigue. Taking random naps. My rationale was that I am so stressed out my body is shutting down to recharge. My better half says that I am tired more often.
2) Shortness of breath. This one sucks. Literally. You kinda just need a beat to suck in more air after you climb the stairs. Laundry baskets and I just aren't mixing like we used to. Just about anyone can huff and puff a little bit when they sprint to the top of a three story twin. The rationale is that I've been out of shape.
3) I've always despised putting laundry away however now it is accompanied by a tightness across my upper chest. Oh the nerve. Really.
4) Oh, I've had a couple chest pains here and there but mainly when stressed. I have no rationale for this one except every time am so surprised and say, what the hell was that?! And then poof, its gone and I forget about it.
5) Dabbling in not lying flat, just feels weird. Like you have this urge to sit up.
6) Palpitations that feel like really hard heart beats when you lay funny. So you shift your weight and it goes away.
7) Finally, a little lightheaded after I bend down to clean up cheerios off the floor or other such fabulous tasks.
The docs tell me that adult congenital patients really compensate through the years so they never have a clue of their true condition. They've always lived with it. Its only since June some of these symptoms are new, but some are old friends. So once its fixed, I could feel some cool improvements. Like dude, after all that, I *better* feel something is improved overall b/c I am walking away from this with more than an f'en scar.
The thing that probably freaked me out the most was last weekend when I just felt weak after some light gardening, grocery shopping, weekend errands, yada yada. Have you ever experience low blood sugar or the feeling you didn't eat enough protein or perhaps you skipped breakfast? My rationale was maybe I had a small tummy bug running its course. I just didn't feel right. Again the husband is like dude, reality check, that is a symptom. So for those keeping score at home, that's # 8. I actually felt it again today. Yet even as I work it out here, I think to myself, this doesn't feel how I thought heart failure was going to feel.
So back to the bizarre part. This weekend we spent with Tom's uncle and aunt on the Sassafrass River. PS thanks Libby for being the unofficial photog and posting lots of fun pics to FaceBook! As you might of saw, we did all sorts of water activities. Including mom kayaking around with a kid. So how do I look, appear and indeed feel GOOD, and yet need open heart surgery?
I joke a lot at the aspects of doctors literally calling this "elective."Well shit, I
elect to have a tummy tuck while you are at it." How do you voluntarily lay down and open yourself to complications? Physically, mentally and emotionally. And let's not forget the tall dude at the door in the dark robe. Aka Risk of Death. I can give two shits there is only a 1% mortality rate with this surgery; Unbelievably low, blah, blah, blah. Doesn't take out the sting.
Well quite simply, its coming down to the numbers. Science. Data. Testing. There is a lot of grainy black and white pictures on a small screen that add up to the cold hard jagged facts showing me that I need surgery. Regardless of all my rationale to talk my way out of a paper bag, I simply cannot argue with the numbers and science that show I have to replace my valve within a year, or face certain illness. So take these taste of symptoms as a signal of the things to come and say, um, no thanks. Let's not go
there, hunties.
Ultimately tho, it is trust in your choice of medical facilities. That the science it right. That the doctors are right. That the medicine and diagnosis is as modern as you can get. Thats why we're @ Penn. Oh geez. I just wrote an ad campaign by accident. Apologies. One of the top questions I get:
so where are you going? Regionally they are best choice and for this specific Adult Congenital segment I am in, they are easily the top 3 or 5 nationally. I do feel like I am yet another paycheck to help fund the newest building on their campus (Penn's campus has expanded a lot since I started going there 7 yrs ago) however it about going where the cutting edge medicine is.
My husband Tommy Boy convinced me ultimately to get it over with and put it behind us. In June, he was the one that said, call them and tell them that I was experiencing symptoms. And hence the train left the station. I want to live a long life with him and the kids. So in that context, in this situ, it is very, very simple. Any moment it is not, his reinforcement is there to catch me from swaying, "We are doing this now. Let's just get it taken care of." And here's why:
